Over the past thirty years, one of the biggest shifts in health care policy for Americans with disabilities has been an emphasis on helping people live and receive care in their communities, rather than in institutional settings, such as psychiatric hospitals and intermediate care facilities. healthcare institutions.
A New Year’s Eve ruling from the U.S. District Court for the District of Columbia is expected to accelerate this shift and bring nursing home residents under the umbrella of community care. Fifteen years after lawyers for the AARP Foundation and others filed the first lawsuit, the court has done so ruled that the county unlawfully segregated people with disabilities by refusing to move them out of Medicaid-funded nursing homes.
“It is unacceptable to segregate people with disabilities,” said Kelly Bagby, vice president of litigation at the AARP Foundation. “It’s also hard to defend segregators, but states must be forced to defend that position, and that’s what we did with the district. So now they have to implement the court’s order.”
This shift to community-based care, made possible by a historic Supreme Court decision in 1999, has proven monumental for people with disabilities. For much of the 20th century, the population was confined to institutions, received substandard care, or was abandoned altogether. The Olmstead decision gave people with disabilities the legal authority to demand community care and created the home care industry.
But some areas lag behind others when it comes to providing such care. In recent years, advocates have tried to expand the Olmstead umbrella involve nursing facilities. Even though advocates have been eyeing these reforms since the Olmstead ruling, the issue recently gained public attention after the coronavirus pandemic bad conditions that many residents have to deal with. These cases could prove particularly crucial as the country’s population ages rapidly.
Ivy Brown, one of the named plaintiffs in the AARP Foundation lawsuit, entered Capitol City Rehabilitation and Health Care Center after suffering a stroke in 2013. She did not plan to stay longer than six months, but was only able to leave shortly before the court’s ruling. The lawsuit was against the district, not the facility, because Medicaid funds were used to finance the facility. STAT spoke with Bagby, the lead attorney, to understand why Brown had trouble leaving early and what the implications are for Brown et al. v. The District of Columbia could extend beyond the nation’s capital.
Why did the AARP Foundation bring this case against the District of Columbia in the first place? What are you asking them to change?
Many of our clients were isolated in nursing homes for more than ten years. Both of our primary claimants independently said, “the very first day I was in the nursing home, I wanted out.” So when we asked, “Why didn’t you do that?” They said, “We literally had no idea what to do. No one ever told us there was a way out. No one ever told us we could do that.”
We ask the district to create a system that helps people find their way out of the situation where they are so separated. We filed this case in mid-2010. We tried to negotiate many times and went to court twice in this case, and they just wanted to fight it to the end. I think the district didn’t want to get stuck in what they would see as a lengthy lawsuit, but because they didn’t want to settle the case, they ended up in a lengthy lawsuit anyway.
How could residents not leave these poor nursing homes? Were the facilities closed?
They were not imprisoned, although some felt trapped. They just didn’t know how to get out. There was no one to help them get out because Medicaid is such a complex system. The application process is incredibly complicated. The eligibility criteria are complicated and then you have to navigate and select providers.
Some of our clients don’t even have ID when they go to nursing facilities. They never got their birth certificate and may not even be from this area. So they need to have all that basic information – ID, a social security card, birth certificate – and this is just the beginning! If you don’t have any of that, and you don’t have anyone to help you, and you don’t have a cell phone and you don’t have a computer, then you don’t really have anyone to help you get out of this. The system is structured in such a way that navigating the system without significant amounts of support is impossible.
What do former residents look for when they leave a nursing home?
First and foremost, they need to know that there is a world they can live in in their own community. But they need to get a GP, you know. They must identify service providers. If they are in a wheelchair, they may need new adaptive equipment or adjustments to their home. They would need help filing applications to get housing, to get the services.
They need the basic information that there is a world outside the nursing facility where you can get the help you need. Just because you entered one, you don’t have to stay there for the rest of your life.
Why is a city legally responsible for helping nursing home residents leave?
First and foremost, it is a civil right under the Americans with Disabilities Act. A state or government agency cannot and should not keep a person in an institution. It is discrimination under Supreme Court precedent Olmstead vs. LC. If they can avoid that discrimination by making reasonable changes to their system, they should do so.
Now that home and community-based services are the norm in most places, how does the state say, “No, we really want to keep everyone in nursing homes, even though it’s perfectly reasonable for us to try to provide them with case management and transition support.” assistance.”
The DC Circuit made clear that the defendant, the District of Columbia, must prove that it would be unreasonable to provide people with transition assistance and help them move into the community. And the court ruled that they simply had not proven it – because it is not unreasonable. If you have to hire staff to do it, then you hire staff to do it.
Where does this statement stand in the broader case law on the institutionalization of people with disabilities?
This country has a long history of isolating people with disabilities in institutions, including and especially the District of Columbia. There have been a number of lawsuits across the country to get vulnerable people back into communities and away from institutions, away from psychiatric hospitals, away from what were originally called developmental disability centers.
There is now a general acceptance that we will not serve people with mental illness and developmental disabilities and children in institutional settings. But it really wasn’t until about 2010 that people said, “Why are we keeping older people with disabilities in nursing facilities?” The Brown lawsuit is probably our sixth case that we have filed to deinstitutionalize residents of nursing facilities.
Why do people go to nursing homes in the first place?
The vast majority of people go to nursing facilities because they think it is a temporary problem. And if you’re 65 or older and on Medicare, you can go into a nursing facility for up to 100 days, and then go out and live your life. This happens all the time to people who break their hips and need rehabilitation or temporary surgery.
What we saw in that first year of our research with the district is that no one left. They would just stay for their Medicare days and then they would convert to a Medicaid patient resident, and then they would stay indefinitely until they died. That’s not what should happen. Nursing homes should be places for short stays. But in the neighborhood, once you got in, there was really no way to navigate out.
Initially the district did [tons] of nursing home beds that were Medicaid-certified beds. By the time the case concluded at trial, not only had they filled all those beds, they had started shipping people to Maryland. So they increased their use of nursing facilities, instead of decreasing them – leaving more and more people in institutional settings and not doing what the ADA and the Supreme Court wanted.
Do you think incoming President Donald Trump’s policies will move the needle in both directions for future decisions in Olmstead?
I think the vast majority of appellate courts are following the line that the DC Circuit has set, which makes it increasingly difficult for states to say, “We really just want to continue to institutionalize people.” I don’t know if we know what will happen with the ADA and with people with disabilities in particular, but I think the more decisions we get that are more favorable no matter who is in power – they are the decisions that run courts.
It will be difficult for the courts to move away from strong reasoning and strong decision-making, but it also makes no economic sense to continue institutionalizing people with disabilities. It just doesn’t make sense. There is so much research that people are better served in their own communities. It’s not good public policy, it’s not economically sound, and it violates civil rights. The rational way to proceed is where the research is, where the data is, which is to serve people in integrated environments.
I would like to sit down with the district and see if they are actually implementing the reforms the court has ordered them to do. And I’m happy to help them where I can, but the district really has to be the one that can make the difference.